Hi, I have suffered with angioedema for 13 years and I have now been prescribed with Tranexamic Acid to try. Is there anyone else out there who has the same condition and has been prescribed with this drug? If so, are you experiencing any side affects such as aching sore joints, constant tiredness and generally 'not quite yourself'? I would really appreciate some much needed support on this drug and its side affects. Thank you............ :?
Hi,
I have been taking Tranexamic Acid for angioedema for about 2 years and yes I do have fatigue, sometimes exhaustion and sore joints and muscles.I have vasculitis though aswell so I put this down to this, I never thought about it being due to the medication.
I dont take huge doses as I have high cholestrol so I take 500mg x 2 twice a day, I was told to take double this but didnt want to risk it. On the whole this smaller does makes the angioedema better but it doesnt take it away altogether as I do get runs of swollen lips or eyes or throat but nothing like it was and I have got used to people staring at me on the bus!
Hope this helps
So pleased to hear of you surviving so long! ! I feel encouraged. (I almost died in 2009) I have no joint pain/tiredness and have been much more stable with tranexamic acid. Tiredness I get because I loose sleep when the stridor is not being montored or treated well enough. However, I am a very fussy eater - so no chance of getting uric acid in my joints. [Try a few weeks on green and orange coloured vegetables, poultry, beef and lamb, oats, rice]. I am allergic to potatoes, oranges and wheat,and I avoid seafood, nuts and strawberries. I eat alternative breads made from Kamut, Spelt, Rye, Millet, Barley ( but no wheat); NO YELLOW FOOD COLOURING! I am ok with dairy and soy, but only diary wholemilk ( I cannot tolerate skim milk). I can eat in Thai, Vietnamese and Indian restaurants OK. ( just avoid tandoori and bright yellow curries though)
Taking 3000 mg tranexamic acid daily ( 3 x 2@500) for 3 years now, plus 1 x cetirizine daily (one or two more daily during attacks) and steroids (5 - 12mg per day as required). When I have attacks ( e.g. if I wake with stridor or am swelling up) I now have a prescribed plan: take 1 x cetirizine and wait 15 to 30 minutes; if I am too far gone on waking ( throat too swollen) I also take 25mg panafcortelone steroids- wait 15 - 30 minutes, and take 25mg again if needed. 50mg means I should go to the hospital or GP, but 50mg steroids in an attack holds me. I see the doctor next day and it takes forever to reduce the steroids again back down to 5mg. Have an epi pen - for 3 years now, but never had to use it as the 25 + 25 steroid remedy holds me during bad attacks. ..But only since I started using tranexamic acid.
When attacks are bad (- i.e you have outrageous unbearable pain like a gall stone attack, or are severely swollen/ or swelling too rapidly) ; always go to casualty at the local hospital..Mine treats me with a 200mg injection of steroids. Last two attacks required this treatment to be repeated ( i.e. 200mg in emergency, plus 200mg and hour later) but it apparently saved my life. Following this always have blood tests done to monitor your C1 / factor 4/white cells etc - if you have this awful condition, you know what a blood test is!
Cant find a sufferers group in my country so thanks very much for having this patient blog for us.
Hi,
I am so glade that you survived that disturbing disease. Actually, I am not here to answer your question, I am here to ask you a question. Did you really cure it? and Did it go away?
Hi am taking that at present at least 7 x 500mg a day but my angioedema still trying to come up it makes the joints hurt but i am tired anyway friom scratching all night last time it took it i reduced the dose slowly over a few weeks and the angio stopped may not be so lucky this time maybe you should have a thyroid check as this can caiuse and out burst iof angio sylvie
Hi, my med mix now includes dapsone and that has helped to reduce my angioedema even more. I take 100mg daily x
Ps I have had my thyroid checked, including antibodies but all ok. Have your B12, vitamin D and calcium checked, these are often low with conditions such as ours, I have B12 injections every 8 weeks and ad cal for the other two xxxx
Hi Winter64
I am still waiting for an apt for a immunologist as i have never seen one before despite having suffered this horrible condition intermittantly for 50 years I am taking 500mg x 8 tranexamic acid a day to suppress one of the worst outbreaks i have had if i take less i am itching everywhere although the lumps are smaller goint to the docs next week but had to wait for an apt will ask them to check my B12 and calcium what type of angioedema have you got and how bad does it get for you it is a huge help to speak to somone else who has this problem xx
Hi Sylvie,
im not sure what you of angioedema I have other than it isn't the hereditary type. Mine came on in 2005 along with urticaria so I was referred to immunology for investigation. I have been under them now for 10 years. As time has gone on I have developed other urticarias, so I now have chronic, pressure, delayed pressure, cold and dermographism along with urticariasl vasculitis. My wheals didn't respond to antihistamines so I was sent for a biopsy and they found the vasculitis.
My angioedema affects my face and hands and I think I get internal gut angioedema too. Before tranexamic acid and dapsone the whole of one side of my face would fill with fluid from my eyebrow down to my chin and it was so heavy with the fluid it would drag my face down. When I got the tranexamic acid it just went in my eyes, my mouth or my throat, but I didn't need an epipen. It would start on my lips at one side and then through the day move over to include all my lips.
My current mess are: 100mg dapsone, 180mg fexofenadine, 300mg doxepin, ad-cal, B12 injections. This seems to keep things roughly under control, I haven't had any remission in the past 10 years and if I'm late taking my meds I start popping up in wheals and swellings, but it's much better than it was.
I go to a specialist immunology and allergy unit here in the North, I think there is one at St Thomas in the south.
I have muscle and joint pain, hair loss, headaches, fatigue, weight gain, etc and that has never changed, but I still work and you just plod on don't you 😄 xxxxx
Hi Winter64
thankyou so much for answering me I live in S yorks
when i was a child it was urticaria with some sewelling sometimes and people just ignored it as in doctors parents etc the episodes would last 6 weeks or so as i got older it got much worse inm y early 30s i had several episodes with face mout swelling masive wheals itching manically antihistimines stuggled to control it but it baited after 9-18 months i had an uderactive thyroid a few years ago i was attending the skin clinic they decided after 6 month sof knowing to treat my thyroid and it stopped dead within 2 days of taking thryoxin if my thyroid goes out of sync it flares again last year i had a really bad stomach and the agioedema flared up very bad everywhere 3 months down the line i asked for a test for Halico bacter pylori (germ that causes ulcers )
when they treated that which is antibiotics for a week it stopped dead prior it was responding to nothing but i am luckier
than you as i have had several months sometimes years in between attack I believe it has a cause that sets it off they know thyroid and Halico do it
i think we just dont know what the trigger is the only thing different for me is 2 monthsago ny eye pressures were high (start of glaucoma) they gave me drops for my eyes the first lot took my blood pressure down and made me ill and faint all the time I stopeed them and went back they then gave me Lumugan 2 weeks after using them the afiodema flared manically looking on the net this has created 14 incidents o fpeople like you and I they said its the preservatives in the eye drops i have never seen an immunologist but am going to I cant imagine how bad it is to have no reprieve for 10 years i am so sorry for you
at present its very bad the tranexamic is the only thing that works but i am taking 8/9 a day if i take less i am still itching bad but the lumps are not as big are you allergic to any thing in particular ?
when i see the specialist i will ask dapsone etc the last time i took tranexamic i took enough to stop the attcks coming then over several weeks reduced the anexamic a little at a time going back up if it started again until i stopped them altogether and it stayed away for 5 years sharing infomation is the only way to help each other I know what works for me wont necessarily work for you but maybe there will be a common line somewhere medical science has not cure at present for this rotten condition and only people who have suffered it can know how awful it is when my face and lips swell and i can feel my gums swelling its quite alarming how awful for you to have the swellings but like me i went to work despite no sleep and looking awful itching to death
i do hope the drugs you are taking keep it at bay thankyou for talking to me xx
Hi Sylvia, if you are in S Yorks you are in luck. The immunology unit is at the Northern General in Sheffield, which is where I live. According to immunology I don't have any allergies, they have never tested me because they said because I didn't respond to antihistamines it wasn't an allergic cause. So I only have an idiopathic diagnosis. As my current meds keep everything reasonably under control I just go for a check up every 6 months and have bloods done. I also see rheumy at the Hallamshire for vasculitis and gastro on and off for my tummy issues with other departments thrown in when stuff crops up. Lol My H pylori was ok. Mine just rocked up one day and never left, I have taken tranexamic acid every day since I first saw immunology in 2005. It makes my period lighter so it's all good, although I'm 50 so menopause beckons so I have had them check all my meds so I can take HRT when I need it. I hope you get some help and something that works all the time for you. Karen xxxx
Hi Karen
what is vasculitis how does it affect you when i eventually get to see a specialist i will ask about Vit b12 d and calcium so little is known about this condition its so frustrating i think my doctors have been rubbish i asked them fro tranexamic as being the only thing that worked when its very bad and she prescibed it and then said in future go to A&E so i did when it was manic and after a 4 hour wait they said they could not help me
Lately i have noticed on the huge ones on my legs where they have been the skin is dried out the heat coming from them was like a radiator its as if they have dried my skin from the inside and the lumps had gone down but the skin was so sore and still red odd isnt it not had that before
It will be the Northern that i go to
although Notiingham have a good immunology dept that specialize in Angioedema I may have to pay to see the one at Northern if the waiting list is high as i need treatment for Glaucoma and that is on hold at present because of this outbreak
does the tranexamic cause hair loss too or it something to do with the other drugs how awful for you i am on the max of tranex at present not sure how bad they are for you but my joints hurts
no drug is good long term but in your case the swelling has to be stopped what a rotten condition this is you sound much worse than ,me nice to talk to you sylvie xx
forgot to ay 180mg fexofenadine is telfast which is an antihistimine and does not work for me any more x
Hi Winter64,
Im 54 - beentaking tranexamic acid for about 6 years for idipoathicangiooedema. ithas really bought my condition under control - no side effectsI am awareof.However strnage ou shoudl mentionjoint paiand attributeit to TR acid; I had a llot of surgery last year and struggled with reducing steroids after surgery; its interesting you mention joint pain, as JP has been an issue for me for about 9 months. We had attributed itto steroid withdrawal symptms not angiooedema. e.g when I stand after sitting,cannot move to step for about two minutes then Im OK.
Someone mentioned hormone treatment her on this iblog - that is what caused my angio oedema. Hormone treatment. Stop Dont do it! (I was prescribed JASMIN - now taken off the market in Australia. Thank God!)
I use cetirizone. Brand name is ZYRTEC. I found some own Pharmacy brands of the same compound can be just as good, and cheaper. During a lethal attack I can take up to 12 16 of them (1mg) to slow it down, without resorting to steroids. I take 2mg -5 mg evey day anyway; begining of day. If I notice an attack coming ( usually my chin swells up or i get a triple chin) I immediately take extra 3 -5mg; That usually holds me and stops the attack porgressing. Swelling goes down in an hour or two if i act promptly.
Hi Winter, hormone treatment is thought to be the cause of my idiopathic angio oedema. I was given JASMIN, which was later taken off the market in Australia, and elsewher I believe. however it was too late for me. The damage was done and has been permanent. Don't mess with hormone treatment. maybe tranexamic acid will help your menopause anyway. It can be good for some of its symptoms. Check it out. Goodluck.
Winter64, do you think tranexamic acd is causing joint pain? I am struggling with joint pain at presnt, for about 8 - 9 months now; we had blamed it on steoid withdrawal too fast. but are eyou sayign you think its the tranexmic acid?? Would love to know thanks.
Do you think tranexamic acd is causing joint pain? I am struggling with joint pain at presnt, for about 8 - 9 months now; we had blamed it on steroid withdrawal too fast. but are eyou saying you think its the tranexmic acid??
Hi, no I didn't put it down to tranexamic acid, the original poster mentioned that. I thought my joint pain was part of my vasculitis or internal hives or angioedema. I have had all this for 11 years now and never had remission, but when I have had to have steroids, usually in winter for chest infections because I'm asthmatic when I come off them my joint pain is a lot worse, if you are tapering pred then this will cause joint pain with every drop down. Karen x
Hi Rosie
i have been on tranexamic for 4 months now and i have pain in my fingers coming and going and knees its always the last 2 fingers that hurt and i have problems bending them without pain as i have reduced the tranexamic amount per day the pain has been less so i summise its them that cause it the zyrtec i have to take 2 per day 10 mg each and 8 tranexamic and also a montelukust 1 x 10 mg to control the angio
so far i have reduced the tranexamic to 4 per day and the zyrtec to 1 a day the other one is to alter the reaction to histimine but works over a long period of time at present i have no lumps or swellings